Friday, February 19, 2010

I'm just going to forewarn you that this posting is more of an informative post than anything else. It's something I'm personally dealing with, so I just thought I'd share. You never know who might stumble across this blog looking for answers; same as me.

It all started in Fall of 2008 and over dinner I realized I couldn't taste much of anything. Like I was eating with a burnt tongue. I'm one of those people that constantly burns their tongue on hot food because dang it, I'm hungry now and can't wait for it to cool off. So, I just thought it was one too many burnt tongues and I'd have to wait for my taste buds to come back. They never did.

I went to a couple different doctors who just looked at me funny; they didn't see anything physically wrong. But come on, it's not in my head, quit putting me off! One of them sent me in for a ton of bloodwork, about 15 tests. Everything came back normal except for my SSB Sjogren antibody. It should be below 1.0 and mine was 3.1. Neither of us really knew what that meant except that I needed to see an expert, in this case, a Rheumatologist. This could potentially be Sjogren's Syndrome (pronounced SHOW-grins).

What is Sjogren's Syndrome? It's an autoimmune disease that normally manifests itself as dry eyes, nose and mouth but can lead to other problems, such as nerve and kidney problems and sometimes Lymphoma. There are two types of Sjogren's, primary and secondary, mine would be primary which means it's not caused by another disorder, but exists on its own. And in doing my research, I've found that my Trigeminal Nerve (taste) has been affected and I've always had Raynaud's Phenomenon. Raynaud's isn't tied to Sjogrens, but those with primary can also have Raynaud's. This is a circulation thing and when my fingers are exposed to extreme cold, the top portion of all of my fingers turn white until I warm them up again and get the blood flowing. Honestly, I always thought that happened to everyone's fingers, but hey, you learn something new everyday.

So, I'm seeing a Rheumatologist next Wednesday and we'll see what she says. It's an appointment I've been putting off, mostly because I have to drive out to BFE to go (seriously, HMOs suck). But hopefully, if it is Sjogren's my regular doctor can help with treatment. I can't imagine making the drive out there on a regular basis.

So that's that. Sorry for the novel, but hey, maybe someone with similar symptoms will read this and find an answer. One in 70 people has Sjogren's and 95% of them are women.

5 comments:

I'll be fine. Even if I am officially diagnosed, it's one of those things that are better managed when caught early on so that you can be monitored for the scarier things. I'm not worried about it; it just sucks that I might never get my taste back and that I'll just have to watch for other symptoms.

I actually have a friend who has this. She said it is very treatable... It's funny because you are the only other person I know that has it too... Which wouldn't mean a lot except that I work at a doctor's office.

For as common as they make it sound, the doctors I saw seemed pretty clueless about it. Weird.Yeah, I know that the dryness can be treated, but I'm not really having those symptoms yet. We'll see if I can get my taste back though. That would be awesome!

I have sjogren's and I have been to the Sjogren's clinic at the University of Penn and I also went to the National Institute of Health to get tested. Initially, I resisted drugs because I wanted to treat my disease naturally with exercise, healthy food and supplements. Within a few years of being diagnosed I became more fatigued,achy, and the salivary glands in my checks often became inflammed. In the last 6 months I have regained my health. I started taking plaquenil ( the dr. at Sjogren's clinic said that they did a biopsy on the salivary glands of people who took the drug and they found less salivary destruction), I take 2,000IU's of Vitamin D every day, also recommended by the specialist. I also experimented with a gluten free diet and I found if I eat too much food containing gluten, my lips feel dry and the inside of my mouth swells slightly so I try to avoid it.

Good luck! It is definitely a manageable disease. It is important that you see dr.'s who specialize in the disease.